September 7, 2008 at 1:20 pm #21616darlaParticipant
Hello, I am new to this site & am grateful to have found it. My husband Jim passed away last Tuesday 9/02/08 after only 7 weeks. He was a normal health man when this started & now he is gone. He was only 62. Everything you are feeling & have gone through Pauline, I am now feeling too. Finding this site & reading all of these posts is helping me, but it does not take away the pain, loss & frustrations. We all share this horrible common grief for a devistating disease. I too hope that in time I can help others to cope with what I have been coping with as you, Pauline, & the others here have already been a help & comfort to me.
DarlaAugust 29, 2008 at 9:41 pm #21615
Thank you Lainy and Joyce and Carol,
I am still tormented by all the things that might have been , the “if only I had….” and I don’t suppose this will ever go away. I am also starting to do the only thing that makes any sense at the moment which is trying to help others on this site to find their way through their frightening journey with this disease in the least difficult way possible.
With very best wishes to you
PaulineAugust 26, 2008 at 9:06 pm #21614
Absolutely makes sense to me, I stated that above, sort of! You also have all this void right now that was filled with care taking before. In time you will fill those voids with other things. Someone who cared as you did will certainly fill other needs and hopefully they will be needs of a different nature! You will make it through!! I believe everything you are feeling is only natural right now but down the road things will change. Its all in the natural progression of life.August 26, 2008 at 8:41 pm #21613
Thank you for taking the time to reply. This does really help. I was thinking today about how Tony used to say to me that he felt more sorry for me in all of this because I would have to deal with the aftermath. Instead of seeing myself solely in the role of carer with all the responsibility that entails I am beginning to see that what we went through we went through together, that when he suffered I suffered as well and that when he died a large part of me died as well. The small part that remains is now having to deal with that aftermath which seems an impossible task. I’m not saying this to feel sorry for myself but rather to try to come to terms with the part of me that keeps punishing and tormenting myself. Does this make sense to anyone?
PaulineAugust 26, 2008 at 6:09 am #21612jmoneypennyMember
I am so sorry for your loss. Words can’t console you right now, but there are people here who understand your pain and grieve with you – you are not alone. I wish you some consolation and peace during this sorrowful time.
-Joyce MAugust 25, 2008 at 8:05 pm #21611
Dear Pauline, Everything you feel is what I am feeling already and we are not at that dire point yet. Anthony’s life was taken out of your hands when he was diagnosed with this monster. There is NOTHING more you could have done. To be there with him, to be a loving wife and partner, you did the best you could do and thats all anyone can ask. Teddy is always apologizing to me for the way he is now and it breaks my heart. What’s worse is I know down the road what he is really going to have to face. Everyone keeps telling me what a fabulous job I am doing and if they ever needed an advocate they would call me. Yeah, well, they are not walking in my shoes or yours. Family and friends come and go, they see a smiling Teddy but they don’t spend almost 7*24 with him. You must know that you did all you could and in the most timely manner you could.
For those who have already gone through the worse, could this painful aftermath be that our burden has lifted and it has left a “Caretaker” void in our lives? Not just because it was a loved one but we were so busy we had no time to think and now it is just emptiness. I don’t know I am just rambling on here, one of my down days, I guess. But as time goes on you will find the strength to remember the good times and to carry on as that is what an Anthony would want. I know as I am married to a Salvatore!August 25, 2008 at 7:31 pm #21610carol58Participant
Dear Pauline, I’m so sorry you’ve lost your sweet Anthony. I pray God’s strength and comfort for you and that things will soon be a little more bearable.
CarolAugust 25, 2008 at 6:46 pm #21609
Thank you so much all of you for your support and sympathy. It is very helpful, especially because I know that you do really undestand how I feel more than most people.
I know I tried my very best to support my husband but I feel very dissatisfied at my efforts. I now look back at the delays, for example, in getting started on treatment after the radiotherapy in February and , while I know it is really the system which is at fault, I can see ways in which I should have done more to speed things up. Every one, including Anthony, thought I was doing a really good job but all I can now see are my weaknesses and that may be he would still be alive if I had pushed them harder. Anthony trusted me completely and I think he felt safer knowing I was fighting for him but I just feel that I have failed him. I undestand, objectively, that it is the lack of research and funding for treatments for this disease which is the real problem but I suppose the up shot of this is that those of us who find ourselves in the position of advocate and carer for someone we love with this disease is that it becomes our responsibility to find a way through it for them, to enable them to live as long and as well as possible. I used to think I was doing a pretty good job but all that has changed in my mind. I clearly wasn’t good enough.
Yes, Teresa, it is the things we can’t change that seem to make life so unbearable and I know that they will remain inside me for ever. What I can’t see is how to live with this pain.
I know Tony won’t leave me completely and I also imagine what he might say to me now but without him here nothing seems to make any sense.
Thank you again, everyone, for your support. I hope to find a way to contribute to the on going fight for other sufferers with this disease.August 24, 2008 at 11:38 pm #21608teresaMember
I am so sorry that you are finding life unbearable without Tony.
When we look back we wish that we could change so many things and the pain that we feel because we cannot change anything is so awful.
This is something that no matter what others tell you happens, it cannot be written or spoke about. It is felt so very very deep inside us.
I remember reading one of your first posts and you put things in detail to help others on this site and I thought then I wish I had read something like this when Alan was alive. I could’nt change anything.
Talk to him, as often as you wish. let your tears bathe your face.
Tell him everything he is still around you.
He will never leave you.
love and light Alan’s momAugust 24, 2008 at 10:24 pm #21607jeffgMember
Dear pauline, My sincere condolences for you and your daughter. I agree with Patty. Religous or not, if you feel you need to talk to your husband, I would find a quiet peaceful place and talk until your heart is a little lighter. If the table was turned, I certainly would do so. I talk to my Dad and Grammie now and then. Even if it is just to say I love you and miss you. I’ve even asked them to keep an eye out for me and if they can, lead me through my journey where ever it may be headed. God’s strenght and unconditional love.
Jeff G.August 24, 2008 at 1:45 pm #21603jcleggMember
My condolences to you and your daughter. My prayer for you is that you find peace. I take great comfort in the fact that we are making an effort to write letters and make the CC story known to the public, and hope you will take comfort from this also. We need research, to find a cure so that other people will not have to endure what all of us – our loved ones and ourselves – have had to endure.
JoyceAugust 24, 2008 at 12:30 pm #21604karenParticipant
So very sorry that your soul mate has moved on. Please be kind to yourself, he would not want you beating yourself up. Anthony knows that you did your very best for him. You and your daughter need to lean on each other through this terrible grieving time. Perhaps getting involved in CC fighting down the road will be just the ticket to help fill your time. You may not be religious, but I will lift you and your daughter in prayer.
KarenAugust 23, 2008 at 11:15 pm #21605
Pauline, my sympathies to you and your daughter. By all means talk to your
husband, he could be waiting to hear your voice! Remember he has only left the room and where ever you go he is right there with you, in your heart. The fact that you did not practice a religion does not mean God does not hear you and God knows what is in your heart. When you are up to it you can help us all by writing your letter as a Caretaker and sending it to me. Sophie and I are collecting letters to send to the Oprah show and if we are lucky enough to have her do a show on CC we will have brought this monster out of the closet so to speak. In the meantime perhaps you can find some peace knowing that what you and your husband had was beautiful and you created a wonderful daughter who also needs your support now as well. Prayers and thoughts go out to you and your family.August 23, 2008 at 10:15 pm #21606tiapattyMember
I can hear the pain in your voice, my mother is gone 3 weeks now and her absence is palpable, how do you replace the person that filled the house, the person that everyone picked up the phone to call?
There are so many decisions to make with this disease and everyone on this discussion board has regrets but the fact of the matter is that we all did the best we could with the information available at the time so give yourself a break on that one.
Pauline, even if you are not religious, I still encourage you to talk to your husband, you need to get it out one way or the other. I am lucky to have lots of brothers and sisters and my Dad and you have your daughter, maybe you can make a list of silly things to do with her that your husband would have enjoyed, maybe you can live for him.
PattyAugust 23, 2008 at 6:53 pm #1462
My darling husband died from this awful disease nearly four weeks ago. He was so brave and he fought so hard. We thought he had much longer, he was doing so well and he wanted so much to live. He was only 64 and we had so many plans of things we were going to do together. He was about to start a really promising phase 1 trial that I had posted about on this site and we were so positive as we had been throughout his battle but he started to get pain and within a few weeks he died. During those last few weeks the doctors told me he wasn’t in the final stages and I wondered why he was so restless and agitated, especially at night.
In the last 2 weeks we were together night and day. He went into the hospice, not as a terminal patient, but to sort out his pain medication and I stayed in his room with him. He wanted me to be there all the time and I wanted to be with him. I became exhausted through lack of sleep. Tony could only sleep for short periods and would call for me every few minutes. Only on the day he died did they realise he was in the final phase. They told me he had 3-5 days and later revised it to 2-3 days but he died 4 hours later. I was with him and so was our daughter who is also devastated. I am so glad he didn’t take a long time to go through those terrible breathing phases but I am so devastated that the doctors didn’t recognise that he was dying sooner because I would have wanted him to be sedated and he needn’t have suffered so much pain and agitation. I so much want to change those last few weeks. I want them to have been peaceful and easier for him. I think he deserved that . He was such a wonderful man- a great leader and educator who always fought to help others and never himself. Even in hospital he was always more concerned about the doctors and nurses careers, work loads etc.
I miss him so much now that life is unbearable and I can’t see a perspective any more. We are not religious. We always talked about every thing and we were always together. I need to talk to him about this and to tell him how much I miss him and how tormented I am about those last few weeks. Instead all I can do is feel such unbearable pain and sadness.
What a terrible disease. Perhaps I will try to help others with cc in some way if I can.
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